Bryn’s Blog :: Dad or No Dad?

Today is a red letter day. Today I have my first infusion as part of the GDNF trial at Bristol. I may be given the real thing or, for the first few months at least, I may be given a substitute, a placebo. Either way, in eighteen months time we will know if this trial has worked, we will know definitively whether or not GDNF is a disease modifying treatment for Parkinson’s disease.

I will know whether my goal of walking my little girls down the aisle (whether they want to get married or not) will happen.

This next eighteen months will decide whether its Dad or No Dad.

Of course I wish I had never had Parkinson’s. And I’m quite sure there are many people who have to listen to me chunter on about it, wish the same. But you play the cards you’re dealt, and, in my view, I made the best of it . As an individual, I have pushed myself more than I would ever have thought possible, and have met people who have become giants in my life. As a team we have played our part in changing the perception of Parkinson’s, advancing medical science for curing Parkinson’s and laughed heartily at the expense of Parkinson’s. I really hope Dr James Parkinson is extremely pissed off with us. To my mind he is the Scooby Doo villain and we are the pesky kids that prevent him from getting away with it.

The trial fills me with hope, genuine hope. This is not the plastic hope which I generated to keep myself going in the early days. This is the hope of others. Real people, credible people not interested in, or prone to, exaggeration. And today I share this hope, because tomorrow I can’t. Once this trial starts, I can discuss it with no one other than my medical team. The reason being I could influence the outcome of the trial. If I’m posting on my blog or on Facebook that “bloody hell, this stuff is magic”, I could influence somebody else on the trial to think they feel better. So this is my last chance to say there is hope. There is light at the end of the tunnel. And it isn’t the light of an oncoming train.

I will be measured to the nth degree over the next eighteen months. Movement tests, mental agility tests, reaction time tests. Only one test, however, will be definitive in my eyes. My three dart average throwing right-handed. I haven’t thrown right-handed in anger since 2007, switching to left-handed throwing before the West Highland Way. In the interests of science the right hand will return to action to measure my three dart average, and to see if it improves. There will be scientific rigour applied; this test will be done monthly and monthly only. Between tests I will throw exclusively left-handed to ensure my right-handed throwing does not improve due to practising right-handed. I will video it to accurately assess where bounce outs would have landed, Ella and Beka will scrutinize and adjudicate. It will be an open label trial; any form of blinding could result in wall damage at best, Death at worst.

Such a venture lends itself to useful statistics such as the number of treble 20s thrown (probably none) and proximity to the target zone; the treble 20 itself. I have bought some Eric Bristow practice rings for clipping to the dartboard to define the target zone. And some Bobby George bling rings to wear on my fingers along with a luxurious wig and a magnificent medallion. It is this sort of attention to detail which will make the trial a success. Topless Darts may make a comeback.

The charity moves on relentlessly; our goal of funding a trial of the Bristol delivery system to cure children of brain tumours is gaining momentum. This week we have funded the Funding Neuro Clinical Lectureship in Translational Neurosurgery post at Southmead Hospital in Bristol. A new Chief Executive starts in four weeks; I will step back to fulfil the role of Trustee with Special Responsibility for Wobblyness, to ensure the Wobbly ethos is maintained. A whole raft of new trustees will join to strive and drive us towards our goal of curing not one, but many neurological disorders. We are establishing an advisory panel of the best engineers in Aberdeen to look at the engineering difficulties of delivering drugs to the brain. And if you thought that our Aberdeen event was spectacular, by November we will have announced a bigger, better and even wobblier event for Ireland in 2015. The charity has outgrown me, and it’s time to let it flourish.